So my mom is bipolar.

Yeah, that kind of threw me for a loop as well. I guess it makes sense… but the funny/weird part is that I've been questioned several times on whether I am bipolar or not as well. My psychiatrist, though, says he thinks not. I'm just very… expressive, and I have a wide range of emotions. *Whew!*

And my sister is back in the hospital, because her drug counselor felt that with all of the stressors in her life right now she might swing towards suicidal tendencies again, so he advised her to check herself in while she was still doing "okay". That makes sense, I suppose. Kind of like a preemptive strike. I'm really glad she's getting the help she needs; I hope Mom can, too.

As far as real life goes, I've been sleeping most of the past 2 days. Drogo's truck A/C went out Monday while we were running errands at the peak of the day (just how the timing worked out), and it was probably 111. The heat really got to me, it would seem, because when we came home I went to bed and didn't really get back up until today midmorning. I found out when I woke up around 11:30 last night that Drogo's truck broke on the way home from work. Fortunately, the parking lot he pulled into, which was literally the next available turn he could take, was the lot of his brother's apartment complex! Fortuitous, no? At any rate, that has me kinda panicked because I've got an emergency appt with my pain doc tomorrow, and it's going to be $120 at least. 

We are literally hand to mouth right now; I don't know how we're going to pull this off… except that the mechanic Drogo goes to is real good friends with Drogo's dad and holds the whole family in high esteem, so I think they'll do a payment plan. Just like the chiropractor I've had to see a couple of times in the past week and a half-- he was a teacher of mine while I was studying for massage therapy, so he is extending me a special circumstance payment plan dealie. I was his best student, and we've always gotten along well, plus I trust him as a doctor more than any other chiropractor in this town. Did I mention that I figured out I had subluxated my ribs along my mid back while I was in the hospital? I don't know how you can knock your ribs out while just laying there, but the bed was kinda hard… And then yesterday, while sleeping, I did something to my hip. I'm hoping it's just a pulled muscle and that I didn't subluxate that, too! Wouldn't surprise me, though, with the type of EDS that I suspect I have.

So that's me and my woes. Life is good, though. Drogo is still working, we've got food and so do the cats, and they are hilarious and the light of my life. Gramma will be taking me to the pain doctor tomorrow, and her car is fairly comfy, but the best part is that I know for certain she'll cover gas expenses! Their car is pretty new, and it's nice, so it gets good mileage. Besides, we couldn't take Drogo's truck now even if we wanted to, and it was an emergency appt so he doesn't have the time off. It'll be good to have Gramma with me. She's new to the world of chronic illness and pain, but she and Grampa have both been troopers. She has been with me during several very disappointing and unsatisfactory appointments so she knows the emotions of that, and it was while I was staying with them after the hospital that I found the intractable pain clinic that gave me so much hope and led me to this pain doc. I was legitimately crying tears of happiness, hope, and relief when I brought the information in to tell Gramma and Grampa about it, so it'll be neat for her to come along and actually see the fruits of that.

I accomplished several things this morning, and I'm tired again, so I think I'll tuck in for a bit of a nap. Fingers crossed about my appointment tomorrow! I sincerely hope we can find a combination that both controls my pain and doesn't shred my intestines all bloody.

Oh, hey, real quick-- I wore my tiara to the chiropractor's because it was a tough day, and on the way out his wife/the secretary gave me a magic wand to go with it! It's an iridescent pink fabric heart with some pink ribbon streamers on a slim, pink ribboned dowel. I intend to bling it up further, and take it with me when I go back of course. I just thought that was really cool of her. ^_^
Watching: Eureka, some anime with Drogo, and Cirque du Soleil.
Reading: Just finished Blade of Tyshalle. Don't know what I'll start next.
Listening to: The shop fan in the bedroom.
Thinking about: The pain, why it won't go away or abate somewhat, how I need to eat something, how much I don't want to eat anything...
Making: Probably some herbed rice. I steamed some rice earlier in preparation for this. Sometimes I just craaaave savory, and I don't have much savory in the house.
Planning: How to make sure I don't run out of pain meds early. Possibly getting drunk, and how to acquire some pleasant tasting liquor. (Peppermint schnapps is effective, but I dislike the taste of straight schnapps.) Wondering if there is such a thing as pleasant tasting liquor...
Feeling: Sick. Pain. Longing. Pain.
Loving: When my muscle relaxers kick in super well and I am unconscious for hours.
Looking forward to: Massage next week. Next pain doc appt to get stronger meds. My next visit to the ER. Think I can hold out for 2 weeks? Three? Three weeks is my next pain appt.

Sea of pain

Adrift on a sea of pain… nothing exists but the velvet darkness against my brow like a gentle hand; the gnawing, burning ache of bone and joint as my body devours itself with sharp, unyielding teeth; the snarl of muscle and screech of tendon as my nerves play against each other in discordant harmony… nothing exists but the pain, stretching forward and backward as far as the mind can comprehend. There is nothing but the pain; there has never been aught else, and there never will be. Adrift on a soulless sea of sound...
I'll admit it-- sometimes I get really angry at how "easy" other people have it in their lives. I mean, yeah, okay, everyone has their stress and troubles and hard times but some people just seem to have a charmed life, you know? Yes, my incredibly troubled and grueling life is definitely the source of some good points, such as the personal strength, insight, and empathy that I have honed, but sometimes it'd be nice to just have it kinda easy for a while you know? And it hasn't been. My whole life, without exaggeration, has been one fight or another for sustenance, sanity, survival… what's up with that?

And then, just when everything was finally going my way… my health tanks. I was so happy. I was in school, pursuing my dream career, I was planning my wedding, working hard for a cause that I loved with a boss that adored me, I'd paid off my school debt, made huge headway in counseling… I had it made, man. I was good. Things were looking up. But then, then, everything fell apart around me and life is harder than it's ever been. Maybe. Life was really hard during the decade plus of abuse too, though. It's hard to say.

It's just not fair, man. And it pisses me off.


There is good news. I have finally found a doctor that is both willing and able to help me with my pain! I'm diagnosed with "intractable pain" which, according to Wikipedia, is "a severe, constant pain that is not curable by any known means and which causes a bed or house-bound state and early death if not adequately treated, usually with opioids and/or interventional procedures. It is not relieved by ordinary medical, surgical, nursing, or pharmaceutical measures. Unlike the more common chronic pain, it causes adverse biologic affects on the body's cardiovascularhormone, and neurologic systems." (emphasis mine) Doctors kept getting hung up on "fibromyalgia" and "chronic pain", missing the bigger picture of my pain, but this doctor gets it, and he wants to help me very much. I could cry. It was seriously everything that I had hoped for.

This is the dr's website, Dr. Porcelli. I have to drive 4 hours to get there, but to get my life back? SO worth it.

I was incredibly nervous, because I was afraid that I was just going to get shut down again and I have nowhere else to turn for help but the emergency room, and that is horrendously expensive. (Seriously… I have no idea how I'm going to pay all of the ER bills. *sigh*) He was very cheerful, funny, and engaging right from the get-go, though, and we chatted and joked back and forth the whole time. He looked at my chart and symptom list and was immediately like, "Yes, you definitely suffer from intractable pain! You've got one foot in the grave, huh? Just one banana peel away from packing it in!" (I thought that was funny. This was after he saw the "draw these shapes on this outline of a body to describe what kind of pain you have and where" chart that I filled out. It was pretty well covered in scribbles.) He thinks that with proper pain management I can actually go back to work part time in the future! Also, after a physical examination he discovered that my eyes have been damaged some from the pain, but they will heal when my body calms down.

The plan is to do a long acting opioid with a lower dose one for breakthrough pain. The ones he gave me this month aren't working very well and I'm still spending about 5 or 6 hours a day soaking in the tub, but we can address that at my next appointment. I'm working on getting physical therapy started, trying to do regular massages, and I'm also starting a few supplements (vitamin C, sublingual b12, omega 3 fatty acid, etc.) to boost my general health. I really want to start eating healthier again now that I'm more capable, but really, I'm basically just happy to have meds at all and to know that things are only going to get better from here! I mean, today my friend the Artist came over and helped me clean the house, and I was able to do quite a bit! The house is so tidy now. Ahhhh… we got to things that I've been wanting done for months, or at the very least since I got out of the hospital. It feels good to see my home in order again.

Also, I applied for disability this past Monday, and it was actually a really fun experience thanks to the lady who did my interview. I should get word in about 3 to 6 months, and she says that it's about a 50-50 chance as to whether I'm approved or denied. We'll see. I'm definitely going to appeal if I'm denied, no worries about that.

Oh, and I'm going to make an appointment with a geneticist this next week. Still pursuing further diagnosis, especially since Dr. Porcelli agreed adamantly that while fibro is part of my problem, it is definitely not the entire issue that is causing me to be so sick and in so much pain. So… we shall see. I've got my money on hEDS (Ehlers-Danlos Syndrome, hypermobility type). I fit the criteria so, so, so well, and a large majority of EDSers are either misdiagnosed or not diagnosed at all. The most common misdiagnosis is fibromyalgia, from what I understand.

I'm learning to live with this broken body, even as I try to figure out in what ways exactly it's broken, but it's not easy. I'm pretty resentful at times, especially when I can't get the help or answers I need or when I see my peers traipsing around and fulfilling dreams and stuff that I wanted to do and cannot join in on and will possibly never recover enough to achieve.

Like pregnancy. Due to the nature of my pain, I will probably be on strong pain medication for the rest of my life. That's just a fact of my life. (Ugh, my poor organs…) The implications of that, however, mean that I would have to stop my pain meds (and a couple others) in order to carry a baby, and that's not something that is feasible for me at all. Remember how I ended up in the hospital and ER a ton last month? Yeah. Just like that. And do you think that the stress of being so sick and in so much pain would be good for a developing fetus at all? Not a chance. Either way, my baby is at a distinct disadvantage while residing in my womb.

I'm never going to be able to carry a baby of my own, and that grieves me something awful.

People don't understand. I've shared with a couple of friends, and with Drogo, but the response I get is "Don't worry, you can adopt! There are other options. Have you thought of surrogacy?"

You guys. That's not the point, not the point at ALL! I know I can adopt or do a surrogate pregnancy. Creating offspring is not the issue here, the issue is that I am never going to be able to carry a baby or give birth, and that's something I've wanted for a long, long time. It's just another precious dream ripped callously from my heart and tossed carelessly on the midden. I don't care if I can adopt; I care that the vaunted experience of childbearing, one that I've already had bitter experiences with, is now beyond my grasp, through no fault of my own, and there's nothing I can do about it.

But folks don't seem to catch that, even after I explain, so… I just let it go. Whatever. Who cares if Cassie's world and future is shrinking and dulling, hope and happiness sloughing off like dried up scabs?
Currently I am...
Watching: Farscape, Kenichi: The Mightiest Disciple, whatever movie strikes my fancy. (Today it was Sherlock 1+2, the Robert Downey, Jr. version.)
Reading: Just finished Wise Man's Fear (again), currently reading The Dragon Book (a compilation of short fiction from various famous authors). I'm technically still reading The Wheel of Time series by Robert Jordan, but I'm still stalled on that one. It got very, very dry and annoying, but maybe I'll get back into it sometime soon Looking for new fiction to pick up.
Listening to: The sound of Drogo's fish tank pump. It's like a mini waterfall. Soothing.
Thinking about: Whether or not my pain is severe enough to warrant another pain killer, upcoming dr's appointments and my great hope-trepidation-nervousness, whether or not I can get Drogo to have sex with me tonight (and how to go about doing that), and that I should drink more water tomorrow.
Making: A bowl of cereal, but I ate it. Making art- painting my walker.
Planning: Dr's appts, what I want to clean tomorrow, seducing my husband, products for my store.
Feeling: Content, painful, worried, nervous, hopeful, fearful, proud, frustrated.
Loving: A tidier house (by a margin), my bathtub (at least 3 hours a day soaking away the pain, or trying to), AZ Green Tea, fresh fruit, motivation, visits from friends, encouragement, evening walks, creative juices flowing again.
Looking forward to: Cleaning my bathrooms, seeing the pain doctor (even if I am super nervous-fearful-hopeful!), FINALLY applying for disability, painting more on my walker and pill bottles, finding new books.

I'm sorry I've been remiss in checking in. I'm still alive, but just barely hanging on. The pain has been constant, intense, unremitting, and I've ended back up in the ER a few times despite my careful adherence to the prescribed usage of my "pain relievers".

I'm hot on the trail of getting in with a new pain specialist, but it's hard. Every day is a struggle against desperation, bleakness, and overwhelming pain. Not having a break from the high levels of pain is wearing me down and making me very, very sick. Something's gotta break, and soon.

So, just hanging in there.. trying to survive. Hopefully I'll have some good news to report soon. Until then, I just don't have the energy for anything outside of myself, and barely even that.